Dance with me

A Facebook post earlier got me thinking about the effort we expend in passing as non-autistic. The lengths we go to to conform. And what that costs us.

What is “Passing”?

Passing is a term deriving from the phrase to pass for, as in being accepted as something you’re not. In this case it’s when an autistic person isn’t seen as autistic, when the typical, instinctive behaviours are successfully masked.

It’s acting, mimicking the behaviours of the people we see around us so that we don’t stand out. We’re playing a part, assuming a character, portraying a role. We’re hiding.

What do you hide?

The specific details vary from person to person, but essentially we hide those behaviours that non-autistic people don’t display.

Physical behaviours

The obvious one is stimming, often repetitive movements that we use to help regulate our sensory processing. This may involve rocking, tapping fingers, manipulating objects in our hands or mouths–a whole range of actions.

Then there are physical expressions of emotions that might include hand flapping, twirling, running away. Both positive and negative emotions can have involuntary physical expressions.

Still other behaviours are sensory-seeking, where we take comfort from particular physical sensations. That might be a weighted blanket, particular sounds or lighting, the smell or feel of an object: anything that stimulates one of more senses in a specific way.

And there is the flip-side: sensory avoiding. Some sensations such as bright or flickering lighting, loud or sudden noises, particular textures, being too hot or cold, and more can cause a reaction from discomfort to acute distress and physical pain.

Verbal behaviours

For autistic people who are able to communicate via the spoken word, there are often differences in rhythm and pitch between our speech and that of non-autistic people. There are also commonly qualitative differences in vocabulary.

Many of us script: that is to say we have a set of stock phrases that we like to use in certain situations. They might come from TV, films or books, other people, or they might simply be expressions we have used once that kind of stuck.

And then there is echolalia (and the related palilalia) where we repeat words or phrases that we hear (or say ourselves) over and over involuntarily.

Social awkwardness

This is one of the classic traits of autism: being socially awkward. While many of the other behaviours can be suppressed with effort, interacting with other people socially means learning skills that don’t always feel comfortable or natural.

And that’s if we’re able to learn them well enough to become fluent. The barriers may simply be too high.

That sounds like hard work

If you’re thinking that sounds like a lot, you’re right. Some autistic people find it easier than others, just as some people have an innate talent for drawing or dancing. But unlike a hobby or even a career we have to put the effort in every waking hour of every day.

Yes, as with anything that’s practised constantly, we can become very skilled at hiding how we really are. Many of us have heard the refrain, “But you don’t look autistic” in response to telling people that we are. Could you just not?

Being skilled at something does not mean it’s effortless. It might look effortless, but that’s the result of many years of experience and practice. Like a prima ballerina, we put so many years of training, so much effort into making it appear fluent and natural, flawless.

It’s exhausting. And what makes it harder is that many of our instinctive behaviours are things that help us cope better. Stimming reduces sensory overload, reduces our stress and anxiety. Many other behaviours either help us cope or are ways we communicate, like an autistic body language.

So why bother passing?

In a word, safety. We go to these extreme lengths, make this huge effort so that we don’t stand out. Because we get taught over and over that standing out, not fitting in, gets us hurt.

Most of us have been bullied, anything from taunting and name-calling to beatings that nearly killed us. A few have been murdered simply because they were different, because they didn’t act like everyone around them.

Many others have been abused, emotionally and/or physically, to force them to behave in ways that are deemed acceptable. There’s a whole industry of so-called “therapies” like ABA that use one or another form of coercion to supplant innate behaviours with more socially-appropriate ones.

We learn that being openly autistic is unacceptable and will be punished. Wouldn’t you also try to conform in the face of such threats?

How to help?

The good news is that you can do something to help any autistic people you might come into contact with. It’s called acceptance.

We do things our own way because our minds work a little differently. We can come across as unusual because we act and react differently to the way you would. We don’t behave as you would expect.

But that doesn’t mean our ways are wrong. Just different. So don’t judge us, don’t fear us, and at least try to understand us. But even if you can’t understand you can give us the space to be ourselves. Accept that we are different.

And if we feel accepted we can being to trust you, we can begin to conquer the deep fear that inhibits our instinctive autistic behaviours. We can begin to relax a little, expend less energy on maintaining the mask the whole time.

We can begin to be ourselves. We can begin to grow. We can begin to reach our potential without the huge weight of pretending to be somebody we’re not holding us down. Passing is a burden we could happily do without, but we need to feel safe first.

I have been working for years to overcome the inhibitions I developed in response to bullying. I’m still afraid of ridicule if I do things like hand flapping in public, but at least I can be myself at home and with my friends. Just having a space where I don’t have to be afraid makes a huge difference.

Nobody should be surprised that we act autistic. The wonder is that so many of us learn not to. We should be free to act autistic anywhere, at any time without feeling afraid that we will be bullied for it.

I am 59 and was diagnosed in my mid-forties.
I don’t know who I am. I know that at my core I am a kind person but that is it.
As a teenager I was beaten by bullies regularly and bullied by teachers in the ‘sink’ boys school I was sent to; sometimes hit with wooden rules, gym shoes, plastic strips, ears pulled hard, hair at the nape of my neck pulled, board rubbers, etc. I passed the Eleven Plus easily but my primary headteacher would not allow me to go to the grammar school due to my idiosyncrasies.
My head is full of memories of these times and they play through my mind daily. The mistakes I made trying to fit in that rebounded on me are excruciating in recall. Most of first two decades were painfully disastrous as were various other times later on.
Don’t get me wrong; I am in a better place now than ever before, but tonight I am reflective and anxious about my past and the life choice mistakes I have made, mistakes that have adversely effected my wife of 36 years and my five children. I am so fortunate they are, for the best part, so forgiving, loving and loyal.
It has been a busy weekend so far and I guess I am a bit overwhelmed. I think I am still that very frightened, no, terrified little boy inside and that all the thousands of layers that help me pass for near NT are lies to cover up who I might have been. I’m probably overthinking it all…

I don’t socialise much, because I detest not being who I really am. It took Dom a while to learn not to still my leg if I’m jigging it, and for a long time (right at the beginning) my lack of eye contact made him think I didn’t enjoy looking at him (which I do, very much). In public I can pass almost effortlessly (which I only discovered recently because a friend who’s known me a couple of years turns out to honestly have had no idea – and they have other autistic friends besides me) but I’d rather not feel as though I need to.

As for ABA, I think I told you how I risked breaking the conditions of a care order in order to stop it being done to my son. After his third session I realised that it was the sessions themselves causing his behavioural issues at home, and so I began to make sure I was out with him when his driver called to collect him – apart from the time I unthinkingly answered the door and told the driver very firmly that they weren’t driving Rhys anywhere that day or any other day. Obviously I made my solicitor aware and he contacted Rhys’ social worker himself and told her that ABA was off limits.

This is why I enjoy hanging out with you: I don’t need to try and pass, and you don’t struggle to “get” me. I can just be that autistic, eccentric blonde who is obsessed with all things Doctor 🙂

Since I first met and got to spend time with one of my autistic friends, Sonia Boué, I have come to appreciate how different socialising is in an autistic environment. How much more relaxed I feel during and especially afterwards: there’s none of that need for decompression and recovery because it’s not stressful. That’s why I make an effort these days to spend time with friends like you: it’s a welcome relief to just be myself and not have to explain everything. (Although that habit can be hard to break!) I hope we can spend more time together soon (with your lovely Dom too, of course).

And yes, I remember you telling me about Rhys and ABA, and you know I agree with you unreservedly.

I’m immensely happy I got to know you, and form a real friendship – love you xx

Reblogged this on dyslexic annie's Blog and commented:
From a very early age many of us are taught / cajoled / punished / intimidated and ordered to ‘be normal’, listen, keep still, stop fidgeting, sit up straight, be polite, accept what is expected and to believe what we are told: that ‘black is white’ and that we cannot (should not) trust our instincts, experience (interpretations of), feelings or beliefs. This is gaslighting. Probably not done to cause harm, but out of fear that we will forever be outsiders / picked on / under-valued and unsafe if we don’t conform as children and throughout life. The message is drilled in so deeply that it’s hard to start unpacking what is our authentic selves and what is (essentially) brainwashing. Particularly when not diagnosed / realised until womanhood. It’s a long, difficult but worthwhile road to self-knowledge and self-belief to understand it all and move forward…

Reblogged this on Laina's Collection – sharing Aspergian/autistic writing and commented:
Amen to this! Every word. Putting on a mask is one of those survival strategies we may not even realize we’re doing. Sometimes we’re so good at it that we even fool ourselves! Such a brilliant and eloquent post 👏🏼👏🏼👏🏼😘